Teen hopes her story of living with HIV helps others

Paige Rawl, 18 of Indianapolis, photographed June 20, was born HIV positive and has used the knowledge of her medical condition to travel and educate teens and adults about living with the virus.(Photo: Matt Detrich, The Indianapolis Star)

INDIANAPOLIS -- Most kids grow up with nicknames. Maybe Lillian goes by Lilly and William goes by Billy.

Paige Rawl, born with HIV, didn't have a nickname until she was in sixth grade. That was the year she disclosed her medical status to her best friend.

"PAIDS," she said. "That's what people would call me."

Paige's determination to fight the HIV/AIDS stigma despite the taunting and antagonizing words of her peers has brought her life into the national spotlight. Sunday, Paige will fly to New York for the chance to win a $10,000 college scholarship and to be on the October cover of Seventeen magazine. She is one of five finalists for Seventeen's "Pretty Amazing" contest. Regardless of whether she wins the top honor, Paige will be featured in the October cover story, sharing her story about living with HIV in the hope that other kids with the diagnosis will be accepted, rather than bullied.

In Indiana, more than 10,000 people are living with HIV/AIDS, according to December 2012 data from the Indiana State Department of Health. Only 79 are under the age of 18. The December 2012 data also recorded 925 children born to mothers with HIV since 1982, the year after the Centers for Disease Control and Prevention officially recognized AIDS.

Though her mother didn't know it at the time, Paige was one of those children. On Aug. 19, 1994, Paige was born a healthy 6 pounds, 7 ounces, to her parents, Charles and Sandy Rawl.

When Paige was 2 years old, her mom and dad divorced. According to her mom, Charles had started using cocaine and had been unfaithful.

Six months later, Sandy was diagnosed with HIV. It wasn't until Paige's third birthday that Sandy found out about her daughter.

Sandy kept hers and Paige's HIV diagnoses secret - even from Paige.

"I wasn't open about it," Sandy said. "I feel like there's always going to be a stigma there."

In 2001, Charles Rawl died from an AIDS-related illness. But Paige didn't know about his disease.

"We never found out how or when he contracted HIV," Paige said. "I didn't see him again until he was sick in the hospital."

She wouldn't find out about her own diagnosis until four years later, when she was in fifth grade.

"I always thought I was taking medication because I had asthma," Paige said. "I started hearing the word HIV and I pieced it together."

Wanting to know more, she approached her mom. Deflecting, her mom told her it was a conversation for when she was older.

So Paige went to her best friend.

Swapping secrets at a school-sponsored sleepover, Paige disclosed she has HIV.

It took only two weeks for the rest of the school to find out.

They let Paige know they were in on her secret by leaving notes on her locker that read, "No AIDS at this school."

Then a group of boys began calling her PAIDS.

Finally, she said, her soccer coach confronted her in front of teammates.

"She said we could use my HIV status to our advantage," Paige said, "that the players on the other team would be afraid to touch me and I could score goals."

'Constantly afraid'

By her seventh-grade year, Paige hated going to Westlane Middle School. Once a straight-A student, her academic record took a nose dive. It wasn't the HIV. It was the stress.

"I was constantly afraid of what people were going to say to me next," she said, "of what they would leave on my locker next.

"People thought I must have been ... you know," she said, "a slut."

In the mornings, her mom had trouble waking her up and doctors told Paige the catatonic episodes were her body's way of dealing with the mental stress.

At school, ambulances carted Paige away to the hospital after stress-induced seizures left her shaking uncontrollably.

She barely remembers the incidents, but she recalls waking up in hospital beds at least a half-dozen times.

She pushed away her meals, unable to eat, and her slim 5-foot-1 frame dropped to 81 pounds.

Her doctor added multivitamins - to keep her hair from falling out - and drugs - to help her appetite - to her daily antiretroviral cocktail.

Yet the part Paige struggles with most isn't the medical obstacles - it's the emotional roller coaster. She realized that once she started losing her friends.

"I tell people, 'HIV does not define who I am,'" she said. "There is no certain face to HIV. This is the type of disease that doesn't discriminate.

"But I'm going to have to live with (HIV) for the rest of my life," she said, "and it's going to be something that not everyone is going to be OK with."

On Sept. 23, 2008, Paige withdrew from Westlane Middle School. She was home-schooled for the remainder of eighth grade. At Westlane, she was a cheerleader, competed in show choir and played softball and soccer. At home, she was bored.

She took up public speaking, which at first was her way of sharing her story to try to reduce the stigma associated with HIV and AIDS. Then it became her way to cope.

"The first time I spoke, it was this huge relief," she said. "I was scared and I read off this little piece of paper, but a big, huge weight was lifted off my shoulders."

'Willing to stand up'

Dr. Elaine Cox, medical director for infection prevention at Riley Hospital for Children at IU Health, has met Paige, and said her public awareness efforts are a part of the brave few who will reduce the stigma associated with HIV.

"She is one of those people who is willing to stand up," Cox said, "and it's exactly what we need to create a better understanding of HIV."

Paige says she hasn't found support groups or other networks in Indianapolis for kids living with HIV and AIDS, mostly because people aren't open about the illness. To reach out to others like herself, she became certified as an American Red Cross HIV/AIDS educator. She has gone on tour with the Indianapolis Urban League's "I Need You to Listen, Hear and Understand Me" program to empower young men and women to take control of their sexual health and stand up against bullying. After one of her speeches, she said, a young middle school boy disclosed to her that he has HIV, even though his classmates and teachers were still in the dark.

She returned to the classroom as a freshman at Herron High School, a charter school in downtown Indianapolis, where she said she encountered a more welcoming environment of students who were different.

Though things were looking up at what she called her "fairy tale" school, Paige still had not told her new classmates about her HIV. She said she worried that they would treat her the same way she had been treated in middle school.

She also was dealing with the stress of a lawsuit she had filed against Washington Township Schools for failing to stop the name-calling and harassment she faced at Westlane. Washington Township Schools officials declined to comment.

Paige's case wasn't granted a trial, and she said hearing the denials from those who bullied her left her feeling helpless and wronged.

She contemplated suicide.

"I didn't want them to feel like they had won," she said. "I never fully understood what they got out of making me feel the way they did."

Her infectious disease doctor sent her to the Community Hospital North Stress Center for a few days. She went back a second time, by her own choosing.

Then in her sophomore year at a school-wide assembly, she told her Herron classmates that she had HIV.

"I told them what I went through in middle school and that I didn't want to have to go through it again," she said.

'It doesn't change the stigma'

On June 6, Paige graduated from Herron. She said she never faced bullying like she did in middle school - except when she ran into some of those acquaintances around town.

"I was at McDonald's in Broad Ripple with friends and when I walked outside, the sister of my former best friend in middle school drove past and threw a drink at me," she said. "I was surprised because it had been a few years after everything had happened. But it doesn't change the stigma."

In the fall, Paige will begin college at Ball State University. She plans to major in molecular biology so that she can be an HIV/AIDS drug researcher. She's also finishing a book - the title of which has yet to be determined - and was recently honored as the health and wellness recipient of the year by the Indianapolis Urban League.

In addition to the Seventeen magazine contest, Paige was a winner in the October 2011 "5 Years 5 Heroes" contest sponsored by Bristol-Meyers Squibb. She also was recognized that month at the U.S. Conference on AIDS in Chicago and last year was featured on Nickelodeon's "Forgotten But Not Gone: Kids, HIV & AIDS," in honor of World AIDS Day.

For Paige, being open about her HIV is about reducing the stigma for other kids who could experience the same bullying she faced. But though she and her mom are hopeful that someday it will be different, they don't think the current education and awareness efforts are giving people enough of an understanding about what HIV/AIDS is and how it is spread.

H. Reid Mattison, medical director at LifeCare Clinic and infectious disease physician with Infectious Disease of Indiana, expects that it will take a combination of scientific developments and educational efforts to reduce the stigma.

"It lessens as people understand it and as treatments improve," Mattison said.

Paige said having HIV affects her dating life - especially when the other parents find out.

"They freak out and want to know if their son has to get tested," Paige said. "But nothing's going on. We're just going on a date."

Someday, Paige wants to have a family. If she takes her antiretrovirals, if the doctors perform a cesarean section and if she avoids breastfeeding, Paige will have only a 2 percent risk of passing HIV on to her children, according to the CDC.

The medicine is different today from when Paige was born, Mattison said, which has made it much safer for women with HIV to have children and reduce the child's risk of contracting it.

"In essence, it was 100 percent fatal," Mattison said. "When you were diagnosed with HIV in the era prior to effective treatment, you knew eventually the virus was going to win in a matter of time."

With highly active antiretroviral therapy (HAART), Paige has been able to suppress the HIV so that it is undetectable, meaning that it is still present in her body but not continuing to attack her immune system.

Mattison is hopeful that there will be a cure for HIV, one that will eradicate it from the reservoirs in Paige's body where it lays dormant but ever present.

A cure, Mattison said, would be a huge step in changing the way people view HIV.

"When you have fear and lack of understanding about the disease ... this notion that it could be fatal ... that's when it becomes stigmatized," he said. "But if you have a treatable, curable illness, that will lessen it."

In the meantime, Paige is committed to transforming the stigma of kids who have HIV, sharing her story and creating her own network of support.